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Chronic fatigue


Finnmin
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I tried to search forum topics on this issue, but I would like to get up to date experiences from you on this one single problem: fatigue. Have you been able to reduce or get rid of chronic fatigue and how did you do it? Medication, exercise, resting, or did it go away in time by itself?

 

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Mine got better as I got the POTS symptoms better controlled.  I still fatigue easier than most people, need 10 hours of sleep a day, and can't function in the mornings, but I do a lot more during the day. I look "normal" during most days. If I over do it during the day, I can crash suddenly at night but I appreciate every day I am not bed bound. 

 

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Hi

Similar to the earlier posts, fatigue was a big issue for me when my POTS was severe and I was mostly bed ridden. As my POTS improved, the fatigue improved. I also found that Mestinon was very good at reducing fatigue. 

In addition, I found that pacing my activity and regular rest breaks was also an important way of limiting fatigue. As part of pacing, I did graded exercise, which involved starting at a very low level of exercise and building up slowly over time. 

 

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Well, it hasn't gone away, but I am able to reduce it. Treating my POTS has helped. Also, taking Licorice Root extract and Ashwagandha (for adrenal support), Glutathione (for detox), and Eleuthero Extract (siberian ginseng) helps improve my energy. I can really tell if forget to take those.

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Thank you all for replying, it's wonderful to hear that there is hope for the fatigue to at least lessen in time. It's been bothering my husband for over two years now without any sign of going away, so naturally he's extremely "tired of being tired". I will definitely try those supplements mentioned here, our neurologist refused Mestinon for now.

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The licorice root works in a similar way to Florinef (i.e. it helps the boys retain sodium and fluid and lifts blood pressure) so if your husband already takes Florinef I'd suggest being careful not to take both. 

Pity the neurologist will not try Mestinon yet. I couldn't tolerate a lot of drugs, but Mestinon was excellent for me, particularly with fatigue. 

Best wishes.

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19 hours ago, haugr said:

In your husband's case, the extreme fatigue could be coming from the low T.

That could be it. Did you by any chance have your prolactin and SHBG mesured when you had low T? My husband is wondering if norepinephrine or something about POTS made both high (but still within normal range), we've heard that prolactin might cause fatigue and SHBG binds testosterone making it unavailable.

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HI, I'm new to this forum. This is also one of my questions (the chronic fatigue) it bothers me so.   I take the Midrodine and Fludricordine (might be spelling those wrong). Today I feel amazing,I can do anything.  Yesterday I spent the day in bed and could hardly move. Is this typical for POTS? Its been like this for 2 years, roller coaster each day.

Also many of you have mentioned "getting POTS symptoms better". How have you been able to do that? I was diagnosed in Nov. 2015 and still haven't felt any better, only worse.  Any helpful tips would be great. 

I'm going to look into those natural herbs mentioned above as well.

Thanks

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Hi Stacey!  My symptoms get better with adequate sleep, low stress, exercise (but not so much that I'm tired the next day), and always better around ovulation.  I still have orthostatic tachycardia during relatively asymptomatic periods but I'm not having fatigue, nausea, or presyncope.  Missing as little as one hour of sleep for two days, or mild stress like an obligation or holiday can cause symptoms.

I'm beginning to notice that when I'm less symptomatic, my blood pressure tends to go low, but when I'm symptomatic it tends to go high. I don't understand this.

My symptoms have been better and worse countless times in the last decade.  Getting better seems to be tied to getting enough sleep, reducing stress, and increasing activity.  Sometimes it's more obvious that others.  

My last episode was obvious - I was losing sleep every night, I had a new obligation of bottle feeding baby animals, and I was having a miscarriage.  Sleep, stress, hormones.  I passed off the bottlefeeding to my son as soon as the babies were a little stronger, I didn't limit sleep at all - no alarms, napping freely, and hormones just took some time to sort out.  During that time, I was taking about 2,000 steps per day (that's pretty much bedrest for me).  2 months later, I can go 12,000 steps per day but I'm still in bed 3 - 4 hours per day and I can't take on any obligations or stress yet.  I'm enjoying it, but trying to take care of myself and avoid the inevitable return of symptoms.

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Thank you for the feedback. I had to stop working because my job was very stressful, which of course I miss it very much. But it does seem those things add up and your right they do cause set backs. I need to log that stuff, maybe I can see a pattern.

 

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On 5/15/2017 at 10:48 AM, Finnmin said:

That could be it. Did you by any chance have your prolactin and SHBG mesured when you had low T? My husband is wondering if norepinephrine or something about POTS made both high (but still within normal range), we've heard that prolactin might cause fatigue and SHBG binds testosterone making it unavailable.

Unfortunately they didn't run my SHBG, but my prolactin was on the very low end of normal range.

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